I've been going through this for a long time and I have never told anyone. Not my doctors, not my parents, anyone. It's gotten in the way of my life dramatically. I'll start from the beginning. In 9th grade I was sitting in the living room home alone when I had what seemed like a seizure. I was completely conscious, I was all tensed up, and convulsing uncontrollably. I went to google and read about seizures. I quickly learned that for that kind of seizure I would have been unconscious. I never told anyone about it because of that thinking it must have just been in my head. It kept happening though. I was always alone.
The summer after 9th grade I went to a summer camp where I was unknowingly bitten by a tick. Throughout 10th grade I started feeling miserable and sick. I kept going to the ER over and over again where each time I was told "You're faking so you don't have to go to school". I started to believe that I was faking and felt like a horrible person. I just gave up on trying to figure out what was wrong. This whole time I was still having these "seizures" alone. Because of always being told I was faking being sick, I thought I was probably faking seizures too. It wasn't until the very end of 10th grade that people started to actually realize something was wrong. I developed a huge blind spot in the middle of my vision. I was diagnosed with optic neuritis in both eyes, and through a spinal tap we found out why I've been feeling so terrible. I had a severe case of bartonella (tic borne disease.It was for me, at least). This entire time it was real?! I wasn't faking?! I have permanent damage to my color vision and ruined my GPA because I was accused of faking sick for an entire year. I believe this is why I'm so terrified to mention my "seizures"
Since then my "seizures" have been getting worse and worse. I started having these jerks that have been diagnosed as benign seizures. I don't think so though. When I am alone these jerks are BAD. I hit myself in the face, punch myself in the thigh, make my lip bleed from punching my mouth. I say things like "I hate you!" and "No!" And a lot of other random things. I never see it coming. I don't have a compulsion to do any of it, it just happens and it's always a surprise to me when they start. I turn my head to the side really fast, my shoulder jerks up, sometimes I fall and can't move. They mostly only happen when I'm alone and when they don't, I play it off. When I have a "seizure", I can tell before it happens. I get vertigo, a migraine, and spots in my vision that almost look like when you accidentally look at a bright light and it leaves a mark. I start feeling really light headed and lethargic and start jerking more than usual. I go to my room, turn off the lights, and pray it doesn't happen again. The jerking gets more and more intense until I can't breathe and my whole body is tensing up. I start convulsing fora few minutes until I calm down. I can't move or talk afterwards. There is another type of episode I have. These ones I think are tic attacks for sure. They usually ahppen when I'm trying to sleep. I just start moving around a lot and jerking and can't help it. I make funny noises a lot too. I have noticed triggers; loud sudden noises, flashing lights, anxiety, and being tired or not getting enough sleep.
I'm talking about it now because last night scared the absolute crap out of me. I'm not entirely sure I was conscious the whole time or not. I thought I was going to have the usual attack where I convulse. What happened instead though is I just stopped breathing. For a looong time. My body was trying to though because my throat was making a very strange noise acting like it was trying to breathe. I didn't feel any pain like you would if you held your breath too long, I just felt panic. It kept happening over and over. When it was finally over I looked at the time and it had been an hour. To me it seemed like maybe 15 minutes, but no, AN HOUR. Because of this I HAVE to tell someone.
I had to quit going to school and started doing it online, I lost all of my friends, I just gave up 12th grade (last school year) but I'm giving it another go. This has been so hard on me and I'm so scared to tell anyone. It'd be really nice to know if anyone else can tell me what they think. I'm doing my best to work up the courage to tell my neurologist.
Some other medical issues I have are migraine, autism, extreme anxiety, post traumatic stress, and PMDD. I am also in the process of getting a narcolepsy diagnosis.
I know this was long and not very well written, so I'm sorry for that. If you made it all the way through this, I thank you so much!